To complement the review article on Enuresis by Patel et al., [1] we would like to submit some personal observations on functional urinary incontinence (with or without fecal incontinence), especially in people with intellectual and developmental disabilities that are particularly challenging to treat and manage.

The literature on small changes and relative improvement in some cohorts such as those resettled from large institutions to smaller community homes is sparse. The behavioral or organic phenotypes of conditions such as Fragile X syndrome, [2] William-Beurin syndrome [3] among others may have some identifiable underlying structural or physiological factors that may be amenable to transient interventions but in the majority of those with idiopathic or sub-cultural disabilities little of note is found. While toilet training itself proves quite difficult, primary enuresis/incontinence progressively acquires additional determinants and incentives that perpetuate the behavior for almost the rest of their lives. In people with low functioning Autism, it is often quite ritualized to defeat attempts to re-train even as mature adults. Sensory aspects such as warmth, moistness, and odor are too reinforcing to be substituted readily. Others indulge in the behaviors to control, test, and manage their animate and interpersonal environments including territorial marking in ways that are not available through verbal communicative channels.

In our experience, behavioral techniques, pharmacotherapy with drugs such as desmopressin, tricyclics, selective serotonin reuptake inhibitors for compulsive aspects, and others have yielded unsustainably unremarkable results. Although response to interventions based on organic pathophysiology such as post-voidal residual urine, detrusor instability are variably effective, [4] a significant majority of individuals continue to live with it and through maintaining dignity and respect, carers adapt accordingly with essentially palliative measures such as incontinence pads, timely and acceptable degree of diurnal prompts to toileting and fluid intake management as tolerated.

Treatises on the general topic as reviewed tend to remain largely silent about this sub-group of the population. A community survey on prevalence, attitudes, and practices in this sub-group in the local population could elucidate pathoplastic cultural factors such as acceptance, accommodation, and stigma. [5]